Your role as caregiver
Your unique contribution
As a parent or caregiver you have a unique and in-depth knowledge of your child; no one knows your child better than you. You are an important part of your child’s team. Never be afraid to ask questions - the team is there to help. No question is too small or unimportant.
The medical team needs your personal knowledge of your child to help them make the best decision for their care. You will know what their crys mean, how they communicate, when they are tired, hungry or unhappy. You know the best way to settle them and offer comfort. No one else can do these hugely important tasks quite like you do or as well.
It can feel an overwhelming responsibility, especially at the beginning of the journey when there is so much to learn about.
Information can help support you in this role
The Cleft Lip & Palate Support Group have produced an information booklet called the Blue Book to help you in this role. It has important questions to ask at key times. There is a place to write down your own comments, thoughts and questions, and to record answers the cleft team give you. This becomes a route map for your cleft journey, and can be filled in together with your cleft team.
If you would like a free copy please contact the Cleft Lip & Palate Support Group on 0800 4 CLEFT (0800 425 338) New Zealand only or e-mail us at info@cleft.org.nz. We can post it to you if you live in New Zealand or send you the link to download the book if you live elsewhere.
We have also added the questions to ask at each stage of your treatment as a subtopic under each specialist section. This is from a parent’s perspective and is based on the Support Group’s collective experience. The sections are called “things to talk about and important parent information”.
Please note the Blue Book is written specifically for families living in New Zealand, there will be some differences in timing and/or management of cleft care plans in other countries.
Remember you are not alone
Information and knowledge helps to prepare and assist you to become an involved member of your child’s team. There is a balance to be found. You need to understand what is going to happen, but also to be able to trust the professionals to do their jobs. Having knowledge helps you to contribute and gives you the confidence to ask questions and understand the response.
Learn to accept and recognise your own limitations and don’t be afraid to ask for help when those limits are being passed. Develop a support network that can help you.Try and articulate how you would like to be supported as clearly as possible. Some days you will feel invincible and other days fragile.
The Cleft Lip and Palate Support Group is here to assist and support you through this journey. We are all parents of children with a cleft, and sharing our experiences can really help.
Ring us anytime on 0800 4 CLEFT (New Zealand only) or e-mail: info@cleft.org.nz
It can be very reassuring to spend time with other families who are going through similar experiences to your own. Find a local coffee group, playgroup or social get together where you can collectively support each other.
refer: Find Local Support or ask your Cleft Co-ordinator at your cleft Hospital
You can educate others
Family and friends and later on in your child’s life, peers and schools do not always understand cleft and what it means for your life. This lack of understanding can mean that they feel uncomfortable or say or do inappropriate things around you and your child. People do not intentionally mean to offend or upset you, but ignorance means that their response can sometimes be less than helpful.
You can help this situation for both yourself and your child as he/she grows up by offering information. Only do this when you feel strong enough. The Support Group has prepared a one page information sheet for family and friends that you can download and alter if you wish.
Keep looking on the website for future resources that can help you in this educational role.
